Burden of Informal Care Giving to Patients with Schizophrenia – It's Magnitude and Determinants

Abstract

Introduction; A diagnosis of schizophrenia has significant effects on the burden of the families. Elucidating its magnitude, type and determinants lead to strategies to ease it. Objectives To study the objective (time and money spent) and subjective burden (care-related quality of life) of informal care. Aims To study determinants of the objective and subjective burden Methods 107 patients (53% females; Mean age; 43± 11 years) from 7 centers and 118 of their informal care-givers (67% females, Mean age; 58 ± 15 years) entered the study. Factors previously found of importance for the magnitude of care burden was assessed. The subjective burden was assessed using the CarerQol, VAS scale (0-10). The objective burden was assessed prospectively during four weeks with daily recordings of money and time spent. Results The Mean (SD) GAF was 52 (11). The mean (SD) time spent on caring was 22 (36) hours per week. Caregivers’ expenses corresponded to 14% of the mean gross income. Females experienced a higher subjective caregiver burden than men [6.5 (2.0) vs 7.3 (1.8)]. A significantly inverse relation between the patients levels of functioning and the subjective burden was found. Conclusion The burden of informal care is considerable and surpasses that of formal care. The patient's functional level significantly determined the subjective burden. The prospective daily diary design revealed a great underestimation of the time spent when recalling it. Since antipsychotic medication is insufficient to alleviate negative symptoms other function-increasing interventions such as social training and jobs should be an integrated part of psychiatric care.